A Voice For Virtual Reality: The Advocate’s Role | Accessibility VR Meetup Recap

HEATHER BUCALOS: So, thank you so much to Thomas and Meryl for inviting me here today and setting everything up, I'm very excited to share my story with you. Hopefully my story can help transition into your life. And you can start to be an advocate for virtual reality in healthcare as well.We'll get right into this, Voice for Virtual Reality, the Advocate's role in Spreading Awareness for patient Use. Thomas said that I advocate for oncology patients to use VR, which I absolutely do, and since introducing my grandfather to VR about six months ago, I have been given the opportunity to see how the older population, the older health care population, can also use virtual reality, so that's kind of another avenue that I'm starting to go down and look into as well.

All, thank you so much for your time, and thank you for being here as a guest. A little bit about myself, I am a registered nurse. I've been a nurse for about 16 years now. I've worked in obstetrics, primary care, orthopedics and patient education.

I really, really enjoy patient education, that's one of my passions. No matter what I'm doing or what specialty I'm working in. love being able to give back to the patients, and putting the power in their hands to take control of their own health previously mentioned I am a cancer survivor. The first time I was diagnosed was in 2014, so I have been dealing with the world of being a cancer patient and cancer survivor for 7 years now.

I started using virtual reality in 2018 and, about two years ago, I became a self-proclaimed VR advocate, specifically for using virtual reality in healthcare and for health care purposes. So, quickly, I don't have any conflicts of interest to disclose today, no information that I'm sharing with you I'm getting paid to share with you, and I don't get any kickbacks for anything that I share. Some goals for the next few minutes, and for this presentation: 1] to identify how VR helps patients to identify some of the barriers to using virtual reality that some patients experience; and 2] hopefully by the end of this presentation, you can identify one way to increase accessibility of virtual reality for patients.

Patients can mean people in your family who are in the hospital, or yourself, using virtual reality, in a clinic, even in a clinic waiting room. Hopefully you'll be able to share some of this information. My goal for you, my hope, is that you'll be able to share at least one thing with one person by the end of tonight. Whether that's on social media, or you can just tell somebody that you attended and just share one thing.

That's my hope for you. I'm going to start by sharing my personal story. In 2014, like I said, I was diagnosed with cancer the first time. My diagnosis was Hodgkin's lymphoma, which is a blood cancer, and I had to go through 6 months of chemotherapy.

As a nurse, I thought I had a pretty good preparation for what I was about to go through,I was pretty prepared for almost everything. But I was not prepared for the amount of pain that I experienced, between the chemotherapy. I think when I went in to treatment, I thought... Okay.

I know I'm going to lose my hair. That was obviously a big thing for me, especially for most women, I think, as our hair can sometimes help us identify ourselves. It sometimes is who we are, or it's a part of us, it's a part of our personality. Obviously that was a big loss that I knew was coming, but I really did not know that I was gonna be in such intense pain throughout this experience, and I would end up in the emergency room about a week after every infusion, and I was in intense pain.

In health care, we ask: What's your pain level? On a scale of 0 to 10, zero being nothing and 10 being the worst you've ever felt, and I felt like I was in 10/10 pain all the time, when I was experiencing these episodes. So I would get morphine through the IV, but that would really only take the edge off. For a short period of time, and I remember there were some times where I would be just laying in bed and I would fall asleep,t ake the pain away, but as soon as I woke up, I was in pain again.

So I had to deal with this pain that did not really have a purpose, because every test was done to make sure that there wasn't a problem. Pain usually tells us that there's something going on that we need to look for in our body. All the tests were done and there wasn't anything that was identifiable, so I going through this cycle -- about every two weeks I would go through this cycle -- where I would get chemo, I would be okay for a few days, and then a few days later, I would have this stabbing pain, and I would end up in the ER getting morphine, and then I would go home, but I would still be in pain because I couldn't bring the morphine IV home with me.

So I talked to my oncologist about this situation. At the time I was going to an integrative oncology center called The Bloch Center in Skokie, Illinois. It was already an integrative cancer center. They were doing things like massage and Reiki.

One of the things that they did for me for the pain was that they offered me a personalized pain meditation, that was about maybe a 10-minute meditation to help with the pain. It was an mp3 file that was emailed to me. That was back in 2014, I had my first iPhone in 2014. We didn't have things back then like the Calm app and what-not.

That meditation recording was $300, which is the same price as today's Oculus. Your basic Oculus is $299. Think about all the apps that we can download on the device that we have now, the Oculus. So, fast-forward, it gets to 2015, I finish treatment and I'm in remission, thank goodness.

I go back to work. I ended up going from orthopedics, I went back and I got my certification to teach Lamaze. While I was learning how to teach Lamaze class, we learned how to teach visualization and relaxation. These things are incorporated into Lamaze, finding a focal point, breathing exercises, imagery --I'm actually going to take you on a little exercise in a moment.

I was teaching these six-week classes on how to reduce pain for expectant parents. With Lamaze, we're really trying to have the mother to be and her partner work on helping themselves manage their pain, and manage the experience of childbirth and the discomforts that come with that. It's a very empowering thing to teach to labor and delivery, expectant parents, Lamaze, there was so much visualization. That was the one thing that really stuck with me, was the amount of visualization that we were teaching in these classes.

I'm going to actually go through one of the exercises that we teach in Lamaze class. You're actually experiencing something that I used to do with teaching the class. For the next 30 seconds, I'm going to have you use your imagination, your real virtual reality that's already downloaded in your mind. I want you to imagine that you are a patient, it doesn't matter what diagnosis.

You go in to the doctor's office and the nurse brings you in. Maybe the room is cold, that's the first thing that you notice is that the air is kind of cold in the room. You can close your eyes if you need to do this, if you need help visualizing this. Just close your eyes.

I'm going to guide you through this. The nurse brings you into this cold room, and she has you sit on the table that's in the room. You sit on the table, and you feel the cold paper underneath your thighs. There's nothing else in the room.

She checks your vital signs, and she leaves. She says: The doctor will be in in a few minutes. We're actually going to do a 30-second exercise. For the next 30 seconds, you're going to wait in the doctor's office, in the clinic room.

Starting now. You won't hear anything for the next 30 seconds. There's nothing wrong with your audio, you're just waiting in the doctor's office. [Silence] And 30 seconds is up.

I'm not sure if any of you can react for me, but if you can, click your react button, and clap your hands if you felt that long 30 seconds. Okay, I'm hearing a lot of clapping. I'm seeing a lot of clapping too. Okay.

Now we're going to do another mental exercise. The next 30 seconds starts... Now. I want you to imagine that you're on the beach.

It's a beautiful day. There's not a cloud in the sky. The sky is a beautiful blue. The sun is shining down on your face.

You're absorbing the sunlight, and you can feel the warmth on your skin. You can hear the waves crashing at your feet. And that was longer than 30 seconds. That was about 35 seconds.

I had you clap for the last one. If you could give me a heart emoji with your reaction if you felt the second 30 seconds was shorter than the first 30 seconds. What we're trying to get at with this exercise is that when your mind is occupied with something, and those ideas are pleasurable ideas, those are nice ideas that you were thinking -- you don't like the beach? It could be a rainforest, or anything that you enjoy.

I took this, what I learned from working in labor and delivery, and I took the experience that I had with this constant painful sensation while going through cancer treatment -- lo and behold, around the same time, I saw a Google Cardboard for the first time, in 2018. I was still teaching Lamaze, I was in remission for cancer, and I just tried the Google Cardboard for the first time. I think I used the Cardboard app to watch a news story.

There was one specific one that was in the rainforest, it was all about the sounds of the rainforest. I remember how peaceful that felt, even in the Google Cardboard. It wasn't very technologically advanced, I was just using my phone and an app, but I thought: How can we combine what I'm seeing in virtual reality with what we teach in Lamaze? And, add onto that, and give this to people who are experiencing painful sensations, and uncomfortable medical situations, in other situations outside of labor and delivery, outside of just people who are taking Lamaze class, chronic pain, things like that, things that I had experienced personally, like oncology pain.

And so, I started doing some research, and I found AppliedVR,and that was the time frame where everything just kind of exploded for me, as far as virtual reality and health care. All of a sudden, I realized that now my pain had given me a purpose, and I started researching different companies, and finding out that VR for pain management really is a thing. People have been doing research on this for years. Even back from 1996, I found some studies.

Now, I want to talk about self-advocacy. I dIscovered this thing, and I thought: I wonder if this can work for me. Around the same time, ironically, I relapsed with cancer the second time. That was around September 2019.

Again, I thought: Oh my gosh, okay, I know I have to do this treatment that's going to save my life, but I really don't want to do it, because all I can remember was the extreme pain that I was in during treatment. That was at the front of my mind the whole time leading up until treatment. I think, looking back, it was probably a PTSD thing, because pain can be obviously something that sticks with you, even when you're not feeling it in the moment.

You remember that something is painful, and your body doesn't want to experience that. What I decided to do -- I decided that I would try the Oculus Go. I brought the Oculus Go with me to the hospital when I had to go through a month long stem cell transplant process. I knew I was gonna be in pain and I was gonna be in the hospital for about a month, so I was gonna be bored and uncomfortable.

I brought the headset with me to Roswell Park, which was the cancer center that I was going to. I had this plan to be very self-motivated, and that I would just try everything. There was really no set curriculum for me to do. It was just an opportunity for me to try and see if this worked for me.

Again, I was self-motivated to try VR. That really, I think for me, had a lot to do with its success, because I wanted it to work. I was excited about it, used it for distraction and relaxation. I did end up having pain again, it wasn't the same kind of pain, but when I did have pain the second time around, during treatment, I would use the headset, once the pain was semi-manageable and semi-under control.

I would use the headset, and I would go into apps or experiences that would really distract me from constantly thinking about the sensations that I was having, constantly experiencing the pain. I could swim with the dolphins in VR, or I could go to the forest and watch the leaves fall slowly down. All of those things really got my mind focused on something else, focused on something outside of me. I also used Netflix in VR, and I have a funny story to share about that.

In the Netflix app on the Oculus, it's pretty fun, because you can be in a cabin in the mountains. I remember being in that cabin in the mountains, in my hospital room. The cleaning lady came in, and she started talking to me. I'm not sure she saw that I had the headset on, or maybe she didn't know what I was doing, but she started talking to me, and, automatically, I went back into the hospital room.

I was kind of frustrated, because I wanted to stay in the cabin, in the Netflix app. That is just a testament to how immersed my brain was, that I really felt like I wasn't in the hospital anymore. Like yeah. I knew I was still sitting in the hospital bed, but I could escape mentally, if I wanted to, which was really cool.

I couldn't even really leave that unit, I wasn't allowed to go off the unit, I wasn't allowed to go outside, I had to stay on that unit, and most of my time was spent in that room. So virtual reality really did give me an escape that I needed, because to be in a situation that is stressful mentally, physically, and emotionally, the brain really appreciates some breaks once in a while from that constant everyday struggle.

Now you know about my story, we'll talk about specifically advocacy. When you start to advocate for something, you really have to see what works. What worked for me was that the relaxation that VR gave to me helped me to decrease the stress that I was experiencing. Like I said, I could do things like swim with the dolphins, or be in a forest, where I enjoy nature.

I engaged, in VR, in things that I like to do in real life. So, I was able to get back that sense of self that I was losing from being a patient. When you're a patient, you really, to me... I feel like I just become a number and a body in a gown.

You really start to lose some of your own -- what makes you you, some of your personality, because people are focused on healing your body. VR actually gives you a sense of self back a lIttle bit. I did things like. I would go to the waterfalls, or I would do some breathing exercises.

If I did a game, that was actually really helpful for the distraction from the pain, because I had to focus on the goal in that game, whereas if I was at the beach, I could just relax. I remember one point where... I was in the hospital in the middle of winter, in Buffalo, New York, where, number one, you don't see the sun very often and it's usually gray outside. I really appreciated being able to imagine that I was somewhere in summer time.

That was really healing for me, because I really enjoy the beach and the sun. In this photo, this is me using the AppliedVR headset. I had the Oculus and AppliedVR headset. This was my room, and using the AppliedVR headset at Roswell.

I shared this with my doctors. This is one of my transplant doctors here. I showed her swimming under the ocean with the dolphins. I knew that this was gonna be my thing in the future.

I knew that I was going to be all about it, and I wanted to share it with as many people as possible, because I felt like, if it was something that they had never seen before, that it would add some value, somehow, to see something new, to see a new way of helping patients. Here she is, trying out the VR headset, and she was really excited about it. That was the first time that she ever used VR.

She actually made the comment that this would be great for palliative care patients, so I knew that already, the gears were starting to turn in her head. She was starting to think who she would advocate the use of VR, which is great, because I turned her into an advocate almost immediately. She was giving me examples of other types of patients who could use it. Like I mentioned first, I wanted to talk about some of the barriers that someone might encounter when trying to use VR in health care.

Number one, obviously, is awareness. The majority of health care providers don't use virtual reality every day. Many of them don't know that it exists, and if they do, they may have never been introduced to the idea of using it for their patients. Then the other question is: Where to start?

What apps should we use? One of my doctors saw me using the headset while I was waiting for her in the clinic room, she opened the door and she came in. She started asking me questions. She's like...

This is great! This would be great for another patient that I have. How do I get this to my patients? I was trying to think...Okay.

Your patient could use an Oculus, and then they could download this app. So, where to start is a great question.do we easily get the right app and the right headset into other patients' hands? Which headset? Which programs?

Where do we find the apps? Should all be Oculus? Or should we have a private entity? Is it another company?

I don't want to use any specific names, but there are many VR companies that are specific for health care. Choosing the right company for the right patient is important, then, how to download the apps, or how to get the right programming into the hardware, and identifying opportunities for use, which types of patients, at what time? If you have a pediatric patient over the age of 13, when should those patients use this?

We can't necessarily have them using the headset when they're going through an MRI machine, but it might be great for when they are unhooked from their infusion, and they have some time in between treatments, maybe they are getting an IV. We also want to identify when we should not be using VR --like I said, when certain tests are being performed, or let's say a patient isn't feeling well. If they're already having upset stomach, you don't want to burden them with something that they might not be able to focus on right now.

The simplest way to advocate for VR in health care is to share it, just like I'm doing right now, just like hopefully you'll be able to share some of this information with anybody and then test it out. For example, I had somebody who saw this article that was about VR in health care that was featured in Cure Magazine in the spring of 2020. That's a photo of me from the Cure 2020.

I have this picture on the header of my social media. One of my friends, one of my lymphoma support group buddies, saw this picture, and he had to go for a stem cell transplant, actually, himself. He contacted me and he said: I was looking at your profile, after you had made a comment in the support group about something, and I was wondering about virtual reality, maybe I could use that in the hospital.

So I said: Yeah, try this, try that. You really just have to encourage people to try and test it out for themselves, and then let them decide what works for them. In this situation, will Google Cardboard be enough? Will buying your own Oculus be what's right for you?

Are you a physician, or do you work in a hospital, and you would rather have a contract with a company who could provide the hardware and the software, and you're going to pay for that, for all of your patients in the facility? So, try what you can, and then adopt what's appropriate. Sharing the information is obviously important, and you want to KISS it. Keep It Super Simple.

Start with what you're already good at. If you're a writer, write about it. If you're a patient, use it. Share your story, it sparks curiosity.

I brought the VR headset to my grandfather, who is in the hospital, recently and the nurse saw it. She was like: Oh, you're doing that! So, that really sparked curiosity in her. I wonder if she might go home and Google "VR in the hospital: What are the benefits?"

Like I said here, on the slide, if you're a writer, share stories of others' uses. If you're a doctor, maybe provide some information in your clinic about VR, if possible. Test what works in your facility, or test what might work you or your patients. As far as what your needs are, as far as the display is, just some additional information.

Where can we share this information? You could share it in your clinic if you're a doctor, you could provide it to palliative care patients. We could share it with other health care staff who we work with. And then really question...

Is this something that would work for me? Would it work for my patients? Finally, in order to really adopt virtual reality for the health care patient, or for patients in health care, we really need to take that leap of faith that, yes, this might actually work for them. Many of us are under the assumption that whatever we did before that's working doesn't need to change because we're doing it now, because we did it yesterday, but we really need to take leaps into trying new things and new ideas.

The mission is not impossible. How can you be an advocate too? Well, if you're convinced that virtual reality helps patients, please advocate for accessibility. Identify what you're good at, and then use it to your advantage to help promote virtual reality for use in health care.

Use your voice to be the voice for virtual reality, like I'm doing right now. That's very easy to do. Share your experience of this modality, so that many more patients can enjoy the benefits of VR. Your voice does matter, because each one of us can tell five people, who can tell five people.

That is the completion of my presentation, and congratulations, you have just passed. Now you are the voice for virtual reality for health care as well! I've passed the voice on to you.

THOMAS LOGAN: Thank you so much, Heather. We have a set of good questions coming in. I wanted to kick off with question on the Netflix experience you had from your personal experience. Your interrupted out of the cabin experience when she came into your room.

Is that something that with training, if you envision the future, where health professionals would be aware of VR therapy, do you have ideas of how that could be communicated? When they do need to come in and check on a patient, and they're using VR? Best practices, or just ideas of how to do VR would work better, so you don't get interrupted out of an experience?

HEATHER BUCALOS: That's a great question. The first thing that pops into my mind when you asked that, when we're teaching Lamaze and we're doing a visualization exercise, we bring them back slowly to the present moment. It's not like an all of a sudden -- okay, we're done, because that's very jarring, and it's not a very comfortable or relaxing experience, to go from one frame of mind to the next. So, I think to focus on bringing the person back slowly,let's say maybe...

The patient is doing a VR experience. There could be something on the patient's door. if the door is closed. You could say: VR session in progress.

to X time. From 1:00 to 1:15, for example. And then 1:15, we can go into the room. The patient will be done with their VR experience, and we're not going to startle them or disrupt their VR experience.

In the case where the cleaning lady came in, with her or anything, she really didn't have any idea what I was doing anyway. She was really cheerful all the time herself. And she was kind of like an experience to have every day as well. But if we knew that the patient was going to be doing a VR program, and we wanted them to have the best experience possible, or specifically, they were doing something to help with pain, and we are all on board with that, then to do it for a specific amount of time that everybody is aware of, and we can go reassess the pain 30 minutes after they have already completed their virtual exercise...

So as long as people know that the patient is doing this, I think that's probably the most important aspect of it. And I guess it's the difference between knowing that someone is doing this, and not knowing. So if someone just comes into the hospital, and they bring their own Oculus, or their own whatever, headset with them, and they just whip it out, and start... going into virtual reality, whenever they feel like it, the nurse is not going to -- or the doctor is not necessarily going to know that they're doing that, because they're not really a part of that process.

Now, if they are in a different experience, where the providers are aware or that this is something that the hospital is offering, let's say somebody goes in -- let's say it's in palliative care. The patient goes into a room, specifically for a VR experience. And someone is facilitating that, then they can be on the same page. And they can know when the patient is going into the VR experience, and they can see that on the shared screen and they know when the patient is coming out of the experience mentally.

So being on the same page with the patient, knowing that they're doing VR is important.

THOMAS LOGAN: That sounds great. I'm gonna put a comment here... There was just a comment, which you may have a reaction to, on...Alison Scheiburger said I met a physical therapist who uses VR for stroke patients, for regaining mobility. Curious if you have experienced anything with stroke patients and mobility in VR?

HEATHER BUCALOS: I don't have any personal experience with stroke patients who are trying to regain mobility. I know that there groups, companies out there, who specifically work with neuro rehabilitation and VR. But I personally have not had that experience. I do think that VR is probably great for that, because it's engaging the brain, it's engaging the senses, and that's really what got me interested in virtual reality -- was the senses.

Because even when I was learning about...I used to be an infant massage instructor, and we were learning about the touch, the sensation of touch, and how important that is as feedback for the brain. So I think if we're using a tool to engage the neurologic system specifically, and that's the pathology -- stroke patients in the brain, then I think that makes sense. So I think that's very exciting.

THOMAS LOGAN: Let's go to a question just on...How would you recommend getting your health care facility involved in VR for health care? Just a place to get started?

Heather Bucalos: That's a great question. And I had to ask that question to my own health care facility. So if there's anyone from Roswell Park, hello. And I'm going to give a little personal firsthand example, real world example.

So like I said, I was using the headset while waiting for one of my doctors in the clinic room one time. And the doctor said how can I get this for my patient? And up 'til a couple of weeks ago, I really didn't have a good answer for her. But I had a conversation with one of the doctors who had no hand in my care.

I just knew that he had used virtual reality for robotic surgery training for his surgeons. I believe the residents who were under him. I set up a meeting with him, and he gave me the advice to talk to my oncologist specifically about a grant called quality of life grant. And that there would be possible funding for the headset, the hardware, and the software, meaning the headset and the apps for the patients in that specific unit.

So, like I said, one of the barriers would be cost, because the head sets are not cheap. And then you may have to pay additional funds for the applications that you want to use, and those applications might need to be specific to your patient population. So, I would start with trying to find people who are interested, number one. Because if you find the people who are interested in your health care facility, they are going to do the work to overcome the other barriers, and you start talking to people who you think may have the answers.

You're going to find help, and they're going to help you answer the questions that are going to come your way, when you're trying to get VR into your health care system. I would do some research and find out... Like I said... What's the patient population?

What's the problem that you're solving for your patients as well? So if you have a patient population, let's say oncology, for example, because I'm very familiar with that as a patient, one of the main things that we deal with is this thing called scan anxiety. Where you have a scan coming up, and there's this anticipation that is almost... You cannot suppress this.

Because you feel you have this scan coming up, and you know you're going to either get great news, you can move on with your life, or the opposite, and your life is going to change in a day, all over again. So, you would have to think what kind of app would help someone with scan anxiety? We need to help them relax. We need to help them focus.

And then, what kinds of apps or companies provide relaxation or meditation? Do we want something that is clinically based? Do we want something that anybody can get a hold of from the app store? Really, what your needs are.

So I would say that researching the right headset or app company is probably pretty important, based on what your patients' needs are, what's the problem you're trying to solve.

THOMAS LOGAN: All right. thank you so much. Heather, we really appreciate your presentation today. You brought us a whole new perspective on thinking about accessibility and really thinking about this experience that any of us can face, going into the hospital and the health care system, and how VR can be used to help us.

So we really appreciate the presentation today. Thank you, everyone, and have a great day or night, wherever you are in the world.